Ricky is doing okay right now. After a rage incident on the weekend, the psychiatrist has adjusted the dosage of one of Ricky's meds, which we hope will help him. This will make him sleepy for a few days but hopefully in the end it will make things better.

As far as his CF, Ricky's doing fairly well. His cough is a little worse at the moment, but this is par for the course as he just recently started his inhaled Tobi and also usually coughs a little more during allergy season. He's been exceptionally good about doing his treatments lately!

Ricky's doing great in school also. We recently had his annual IEP meeting and found out that he has an auditory processing learning disability, for which he will receive some accommodations. He is a solid reader now, and he continues to score straight Bs in school and we are so proud of him!

We have no day care for either of the boys, and no school for Andrew until the school district finds an appropriate (ED) program for him (he is currently receiving home instruction). However, with Dave's help, we've been able to stay home with the boys as needed and take them to their appointments, so for now it is working out!

Today in the middle Andy's IEP meeting I got a call from the boys' day care center that Ricky (whom you might recall is bipolar) was wreaking havoc so Dave took off to get him. This is the second outburst in a week. May be time for a med change. He's repeating old patterns. Screaming, running away, calling nasty names, biting, hitting, punching, kicking, you name it. Right now he is exhaustedly sleeping it off as usual. Anyway, the bottom line is that the day care director told Dave that the boys can't go there anymore. I am still waiting for her to call me. I sent my mom to pick up Ricky's glasses and I'm afraid my mom's still stuck there talking to the day care lady. Poor Mom.

I don't know what we're going to do. Dave is an RN and he works three 12 hour days. So he can take care of Andy (who currently has no school) and pick up Ricky from school on the days he doesn't work. But it looks like my work schedule is going to have to change if we're going to make this work. I don't see how we'll find a day care that can take care of them. There's just no way. I can reduce all the way down to 20 hours and still maintain benefits but my income will obviously suffer. I've got to get this all down on paper and figure it out.

Well, I guess that is it for now. Definitely a week of ups and downs. But largely downs. On Wednesday I felt like just curling up and going to sleep and not waking up til this is over. Urgh.

I took Ricky to the pulmonologist on Tuesday for full pulmonary function tests (his first time) and a visit with the doctor. He also had his blood drawn and sputum collected for a culture. He was GREAT through everything (didn't even cry during the blood draw)... I am so proud of him. I also introduced Dave (my fiance, who incidentally is a pediatric RN) to everyone there and they were pleased to meet him.

The PFTs came out great. I called today for more details, and the doctor says there was a little air trapping here and there but nothing serious, and it was definitely relieved with a breathing treatment. It actually sounds like she was very impressed with how he is doing.

He is also now 4'5", which has put him off the top of the height charts! Although his weight on the charts is still average, it dropped a few pounds, which is not unusual considering he had the flu a few weeks ago and didn't eat for 3-4 days. He did have Tamiflu when he was sick, which we think shortened the length of his illness.

Ricky has had mold (aspergillus) growing in his lungs for some time and has been on medication (itraconozole) for it. The doctor is willing to let him come off the itraconozole after his IGE blood level has been below 200 for three months. I just got back his results from Tuesday and the level is still in the 200s, but lower than last time. So we are on the right track.

So far his sputum isn't growing anything, but we'll know for sure next week. I'm sure he will grow Pseudomonas, his usual bug. I hope nothing else! We will also get the rest of the blood test results next week, and we'll be going back to the clinic in 3 months.

Last week, we saw the psychiatrist. Ricky's been doing really well in school and behaviorally, especially since Dave, my mom and I started using 1-2-3 Magic for discipline. So his psych meds are staying the same and we will be going back in a month or so.

A few weeks ago I requested learning disability testing for Ricky (through the school district), and that is in progress.

Hi there, just wanted to send a quick update on Ricky.

Ricky's doing great, still growing like a weed, and his lungs are doing
great. He turned 8 on November 26, and November 20 marked a whole year
since he got out of the hospital (yay!!!). Ricky's psych condition
seems to be under control too, and he's been putting on lots of weight partially due to the meds he's on. Extra weight is always good for a kid with CF, so we're happy with it.

Looks like we'll be able to send a new picture of Ricky soon for an
update, as his school photos should be coming to us soon, so you can all see how grown up he is now. His face has filled out and he has a dimple in his chin now, and demanded that his hair be cut short the last time, so he looks so much older than before!

Ricky's doing super well in school, learning lots and consistently
getting "top points" for behavior!

Ricky has had a little cough lately which had me nervous but it's not
too bad. Could definitely be worse. He's been out of the hospital almost a year (will be a year November 20) and I'm hoping we can push it wayyyy past a year. At his last clinic visit he was in the high 80s and 90s for his weight and height percentages, which are remarkable for a kid with CF

Just wanted to pop in and mention that Ricky is doing really well in school. He's really liking it. It's the same school he was at the end of last school year and for summer school, but he seems to have started back refreshed, which is really nice. He did have some behavioral problems there in the summer but luckily this school has permission (from me) to restrain him gently and put him in a quiet room til he calms down.

Anyway, he's so excited about it that he's been doing his homework at day care rather than waiting til he gets home, which saves us an incredible amount of time (the time spent doing the homework plus the time we usually battle over doing the homework), meaning the boys actually get to bed on time!

When it comes to the cystic fibrosis, Ricky has also been battling a fungus in his lungs (an effect of him being on antibiotics so much) but after a few rounds of prednisone and anti-fungal medication, he is doing pretty well with that.

Ricky was at the CF clinic today for his 3 month checkup and he is doing great. He's at 90something percentile for height (4'3") and 50something percentile for weight (60.5 lb.). His lungs sounded great. His oxygen saturation was at 96% and he had his best pulmonary function test ever. Great news all around. We're supposed to stuff more calories into him (as always!) in the way of Ensure Plus shakes.

Since April Ricky has been going to a private school for kids with
learning difficulties and he's been doing great there. He is just
about to finish summer school and then he will be in second grade
starting at the end of this month.

I'm coming to the realization that there may be more wrong with Ricky than I first thought... Or even second thought... He is diagnosed with CF and bipolar disorder at this point but I wonder if there's something else going on because we just can't seem to get through to him on proper social boundaries etc. For instance he goes right up to complete strangers and starts conversations etc. And when other kids tease him or whatever he thinks they are his friends. And his peer and sibling relations are just impossible. He just doesn't "get" things that he should get.

His current school placement (a private school that the school district is paying to put him in, since they have no appropriate program) is also awful, so we are exploring (with the help of the school district) other options.

Well, I'm afraid I have bad news on Ricky. He is currently suffering
from a fecal impaction. He's being treated with heavy duty laxatives and we're hoping something happens. If it doesn't, he could end up in the hospital in more major treatment.

Ricky hasn't had this problem since he was born. However, ever since he
was in the hospital in November and was put on IV SoluMedrol (steroid)
for his breathing, he has had problems with bloating, distended abdomen,
constipation, and pain. I'm hoping we can get it cleared out now so he
can get back to feeling better.

ouch!

My poor baby...



He broke his arm at school on Friday.